Registration of a rare disease patient

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Privacy policy

The Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) is obliged and engaged with the implementation of all necessary technical and organizational means, in order to protect your personal data from unauthorized access and use. You have the right to send a written petition to ICRDOD, by which you can ask for a confirmation for the existing personal data, concerning you; Update or change your data;
Clarify the conformity with the law of the storage and processing of your personal data; Forbid ICRDOD to share entirely or partially your data for commercial information, advertisement or market surveys; Ask to be informed, before your data is revealed for the first time.
Sharing of your personal data to third-party is permitted only if the respective individual has given his consent in advance; Data sources are public registers or documents, containing public information; This data will protect the health and life of the individual, as well as in cases when his/her condition is not permitting to provide with informed consent or there are juridical obstacles for this. This data are officially asked by the prosecution or police authorities in order to protect the concurrency and users after the law. This data are necessary for scientific, research or statistical purposes, but guaranteeing anonymity for the individual.

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By completing and sending this registration form, you provide us with your informed consent to be included in our database and agree with the above privacy policy of the Information Centre for Rare Diseases and Orphan Drugs.